Table 3

Study themes and conclusions

AuthorsAuthors’ identified themesAuthors’ conclusions
Brayne et al 35 From interviews (I); from questionnaire (Q).
Hallucinations or ELES (I): seeing children: four reported patients seeing apparitions of children shortly before death this appeared to provide comfort (I); dreams: eight spoke about the power and impact dreams can have in preparing for death. Patients dreamt about other patients or family members (I); lucid moments: seven reported residents with dementia and confusion becoming lucid in the last few days (I); physical changes: some reported how physically incapacitated residents could pull themselves up or do something that they normally be unable to do (I). Need for reconciliation (I).
Unconscious/confused residents becoming lucid just before death (Q); dreams or visions that help prepare for death or have significant meaning to help with unfinished business (Q); seeing dead relatives or children just before death (Q); synchronistic events at the time of death (Q); the dying speaking about transiting to a new reality (Q); desire to heal family rifts (Q); appearance of birds or animals close to death (Q).
ELEs are powerful subjective experiences with profound personal meaning, not a mechanical process. Dying is an intensely individual experience requiring extreme sensitivity and acceptance from care providers. Some unconscious residents can hold off death until loved ones arrive. These ELEs were neither rare nor surprising. Hallucinations evoked confusion and anxiety, whereas other ELEs focused on inner peace and acceptance of death.
Chan and Kayser-Jones27 Main themes: language barriers: most were unable to speak English resulting in difficulties expressing needs, socialising and suboptimal symptom management (eg, pain and dyspnoea). Nutrition: Chinese residents disliked Western food and drink and consumed little of it. Iced water was often served, but they preferred hot water or tea. Therefore, families often provided Chinese food. Beliefs and customs: Chinese residents shared similar beliefs and customs (eg, family involvement in care, traditional Chinese medicine, Buddhist spiritual beliefs and end-of-life care) that influenced how they defined health and envisioned healthcare provision.Cultural diversity in NH populations is increasing, making cultural sensitivity increasingly important. Communication barriers, dislike of Western food and differing cultural beliefs and customs were factors that significantly influenced EOL care for Chinese residents. Knowledge of Chinese cultural beliefs can help HCPs develop interdisciplinary and culturally sensitive plans for them.
Dwyer et al 31 Five themes: a mixture of resident and staff experiences (1) Alleviating suffering and pain. (2) Finding meaning in everyday life. (3) Revealing thoughts and attitudes about death. (4) Caring for the dead person’s body. (5) Coping with perceived gap of personal ideals and reality of what staff could provide. Older people often suffered pain before death. Existential issues were infrequently discussed unless raised by the older person.Greater understanding is needed of palliative care philosophy to develop the care of people dying in NHs. Until NHs are viewed as places of dying and death, care will not be developed and tailored to meet the needs of dying residents.
Forbes30 Five interactive and dynamic themes emerged relating to contextual factors affecting EOL care: communication, quality of life, staff education, teamwork and work environment. Although residents expressed acceptance of death, the process of dying was described by both staff and residents as cold, lonely and painful. Staff, carers and residents valued hospice care. Residents expressed a readiness for death but noted that staff did not initiate discussions about it.The dying process is not addressed and acknowledged for many NH residents. This leaves little opportunity to prepare for death. Development of polices and staff educational programmes to provide good EOL care is warranted. Discussion surrounding EOL goals or treatment preferences was noticeably absent.
Goodridge et al 33 Two main themes were identified: staff caring behaviour (included physical, cognitive and emotional domains) and residents’ unique experience of dying (including restlessness). Dyspnoea was more common than pain at EOL. Both were distressing for residents. Staff caring behaviour was central to residents’ experiences.Nurse and HCA caring behaviour was central to the residents’ experiences. Emotional support for the resident and their family and appropriate and timely management of symptoms were key to the quality of EOL.
Kayser-Jones25 The main factors influencing the experience of dying were: poor attention to cultural needs, cognitive status (cognitively impaired or comatose residents were often neglected), insufficient staffing and poor communication between care providers, residents and families. There was inadequate assessment, monitoring and management of pain, depression, loneliness, fear, constipation, isolation, anxiety, oedema, anorexia, insomnia and fatigue. Dignity was often lost in the last days.Progress has been made developing principles and guidelines for the care of people at EOL, but barriers and facilitators in implementing these principles need to be investigated to ensure everyone can die comfortably and with dignity. Families should be allowed more time to talk about their fears and concerns.
Kayser-Jones et al 26 The physical environment was not conducive to end-of-life care. Rooms were crowded, unclean with insufficient linen and supplies, lacked privacy, noisy and lacking facilities for relatives to stay overnight with dying residents.
Inadequate staffing and lack of supervision were among the most significant organisational factors influencing care. Staff felt stressed and overwhelmed. This meant they were unable to meet residents’ needs.
The environment is an inappropriate for EOL care. To ensure people dying in NHs receive adequate care, changes must be made: separate units with space and a quiet atmosphere for terminally ill residents; MDTs must meet with residents and families to establish a care plan to ensure a safe and comfortable death and effective family support; continuing palliative education and in-service programmes for NH staff and adequate staffing and supervision are needed.
Vohra et al 34 Comments fell into two themes.(1) Appreciation of care: subthemes: psychosocial support (including personal, loving and sensitive), family care and spiritual care (provided by clergy and staff). (2) Concerns with care: subthemes: physical care (including pain control, toileting, monitoring and breathing), staffing levels (often insufficient), staff knowledge (often insufficient), physician availability, communication (poor with families), physical environment (including lack of privacy and temperature and noise).There is a need for improvement in EOL education and care skills for staff.
Whitaker32 Five themes in how residents talked about their bodies:
(1) the incapable body, move to NH is a disruptive event, frustration over loss of control, grief and distress over loss of function. (2) Bodily needs–bodily dependence: a sense their bodies belonged to staff; some saw dependence as sad; for others, it generated feelings of safety, security and comfort. (3) Bodily change and alienation: women more concerned about appearance, men about loss of hearing, sight and so on. Teeth and nail care are important to all, to look good and smell nice. Dying process masks their sense of self. (4) Inevitable death of the body—body slowly dying, getting steadily weaker, losing taste, extreme fatigue, skin and bone. Death as life consumed for some a yearning for others. A lack of power to a restricted life. (5) Body stories and ‘body wanderings’: the body as a tool for communication, a need for body contact, not just tasks of care but for confirmation.
The body is central to the spatial and temporal order of the NH and constitutes the existential midpoint for the lives of older people. It is not death but the bodily decline and disintegration (before death) that older people fear most.
Powerlessness before the irreversible ageing and dying process and how we care for the oldest old is focused on the tasks of caring, not the existential questions.
The slow and irreversible process of prolonged dying can be seen as an unworthy, undignified life phase.
  • ELES, end-of-life experiences; EOL, end of life; HCPs, healthcare professionals; I, from interviews; MDT, multidisciplinary team; NA, not applicable; NH, nursing home; NR, not recorded; Q, from questionniares; RN, registered nurse.